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10th October 2015

Campaigning To Be Heard

I’ve just been reading about a campaign to change the law so families of vulnerable adults are consulted about their care. The campaign, called Justice for LB, was started by the mother of a young man with autism and epilepsy who drowned in a bath at Slade House, an NHS unit in Oxfordshire in 2013. Part of the campaign is a draft Bill that would make a number of key changes to the Mental Capacity Act.

Of course, this is not the first criticism of services when they by-pass the views of family members. The young man’s mother, Sara Ryan was inspired to start her campaign by reading about Mark Neary’s campaign to let his son come home to live with him. I wrote about this in a previous blog ( This was the shocking story of how a father’s attempts to be part of the care planning process were side-lined, and only after a court battle was his son able to return to him.

Sara Ryan tried to give vital information about her son’s epilepsy to the staff looking after him. She now wants to change Mental Capacity law so that anyone involved in the person’s care is consulted about the person’s capacity and what is in their best interest.

Listening to families

Don’t such consultations happen routinely at the moment? Clearly not. Whether this is about professionals thinking they know best, or worried that someone’s relatives might not have the right motives in terms of care, is difficult to say. However just listening to relatives does not mean your professional judgement is going to be undermined. Listening to families means we can learn from years of valuable knowledge of the person. You can hear this message by going back as far as the report into the care of Christopher Clunis in 1994 - a landmark inquiry into community care of people with severe mental health problems. Here the report says that ‘…workers took few, if any, steps to contact members of Clunis’ family, and thereby they lost touch with some of the basic realities of his personal history…’

Tragic consequences

Listening to the views and information provided by families can be crucial in ensuring that the most appropriate care for someone is given. You may get differing views from different family members, you might not agree with what they think is best, but just ignoring them can have tragic consequences, and that’s the lesson of Christopher Clunis. An inquest into the death of Sara Ryan’s son began last week. The coroner’s report may have more to say about listening to families.

David Beckingham – QCS Expert Mental Health Contributor

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